Friday, May 6, 2011

The Medical Journey

Seems to me I am looking at the same road that I just traveled. I am once again having to find another rheumatologist.

To be honest, I am tired of this well worn path. This path that constantly puts me at the mercy of doctors that unfortunately I am having a hard time having faith and confidence in. It wasn't always like this.

Upon my original diagnosis, I was so trustworthy of our medical profession. Like all good patients, I truly believed every single word that any doctor told me. I followed their instructions to the letter including taking all medications prescribed, resting and exercising, eating as healthy as possible, etc. etc. Somewhere along this long traveled road, I have lost confidence.

I am not sure why. I am not sure if anything in the medical profession in particular forced me to this shaky place I now find myself. I just now know that I find this road filled with shadows that I just can't define anymore. And I also find that this particular road is getting more bumpy the longer I have rheumatoid arthritis and now, related immune diseases.

I think part of the problem is that doctors assume (I hate that word) that we all will be miraculously freed from the pain and damage of ra with the newer medications available. True that many patients do OK on these medications but I have yet to hear many stories that they feel 100% again. More likely a 30% - 70% improvement, if even that.

And here in lies my problem...

Since the medications can't cure ra, why do doctors make it seem like if we just take a pill (more likely 5-8 pills) or do a shot or take an infusion, it will all be better? I have no doubt, they want us to have some faith in them, some hope. For this I am grateful, but I think they sugar coat this disease just a bit too much. I think, they don't want to frighten us from the get go of the long road we will have to travel. And, I also believe that doctors don't realize the true pain of ra. I could write a book on how the pain of ra goes untreated or under treated in millions of ra patients.

And so, I find myself on the lonely road again. Walking every so cautiously around the next bend...hoping....praying...I will find the sunlight again.

I am so grateful for your post. You humble me..truly. I love taking pictures and although my hands are a mess with ra and I have already dropped one camera and broke it...I click on. All the photos are from my hometown, Wilmington NC.

Hmmmm....your ra doc shouldn't be putting the burden on you to research. Research isn't going to tell her what works for you. Maybe the next time you have an appointment, you can ask her why she doesn't ask you what works for you. And be sure you have ready the answers. Do let me know what happens.

I pretty much was told by my latest ra doc that he didn't want to treat me. This was a crushing experience for me as I have only lived here for just over a year and there doesn't seem to be many rheumatologists outside of the office I am already using. I need to find another doctor but keep putting it off but dread it.

Thank you so much for your kind words. I love taking pictures and writing. Blogging has been a Godsend for me...it gives me the chance to put the two together. I was a corporate trainer for years, project manager at one point and did inside sales during my career days. This blog gives me a chance to maybe help someone along the way and in return, you all are helping me to heal.

I'm in the middle of a divorce with my Rheumy. I'm going to check out that link on finding a new one. Yes, you are quite the photographer..I will close my eyes and envision myself there since I'm chained at home :x

Uh Oh. You too! What is going on lately with these docs? And we don't even live in the same state? I am still trying to figure out how to source a compassionate one here. I have tried the "traditional" techniques I have employed in the past but not working this time...back to the drawing board.

I am not anywhere near 100% but I can function @ this 65-75%. Without the biololgics I would not have the quality of life I do enjoy. With all the new medical bills being passed the doctors are not going to be reimbursed at a rate they wii accept. The biologics will not be paid by medicare and without a subsidy and we all will be bed bound and broke.

Vague52...our medical situation with insurances and such in this country truly frightens me some days. Yes to everything you have said. I recently did a post on how to save money on prescription meds. I do realize exactly what you are saying. Medicare doesn't cover injectables just infusion meds already. It is a very frightening situation for those of us with unstable insurance and those poor souls without any insurance at all. Where is the humanity in this country?